HAPPY BIRTHDAY JUDAH!

We had a small "family" party on Saturday, the 2nd.

Judah's favorite song card is "All the Fish", so the fish cake was perfect!

He loved every bite.

He had LOTS of birthday cards & pictures to look at, thanks to his siblings & friends.

This year he really got into the presents!

I'm surprised we made it this far into the party without a picture of Judah AND Lydia.

Big Boy Flashlight

BOOKS!!!

He got a shopping cart to walk with & a bike to ride! He is so over the stroller.

1st walk on his new bike

On June 4, we turned around his car seat! 

We sang again & had birthday treat, just us Stewarts.

He wanted to touch the candles. The whole blowing thing is a mystery to him;)

Still his greatest advocate...next to Mommy.

333333333 Happy Birthday, Champ! 333333333 

A 4-Letter Word

I know there a lot out there, but the 4-letter word I'm thinking of is spelled C-H-A-N-G-E. That word is at the root of my avoiding this post like the plague; because it revolves around change. As I've said before, "Change is hard. Even good change". The last 2 months have been really tough for me as we transition Judah from home-based services to school-based. Yes, you read that right: SCHOOL-BASED. Judah will be attending preschool 2 mornings a week in the fall. There's so much involved in making this transition to school, starting with his summer class, that it's often been overwhelming for me. We had to meet with the school nurse to create 3 - THREE - health plans for Judah. Plan 1: What to do in the event of an allergic reaction to peanuts. Plan 2: What to do in the event that Judah's G-Button comes out. Plan 3: What to do in the event of an emergency or trauma when Judah needs an injection of solu-cortef to replace the stress hormones his body doesn't produce. This boy will have things in his backpack that no kiddo should have to have at school: an Epi Pen (although at least he's not alone on this one!), a G-Button kit, and med/needles for an injection. Not to mention the cup he has to take to school with pre-thickened water in it. Oh my. It's a lot to take in. Is it any wonder I've shed more tears in the last couple months than I have since...well, last summer? My emotions have been all over the place, and letting go of Judah is proving to be much more difficult than I thought it would be. And I thought it would be REEEAAALLY hard! I have been a part of every single aspect of his care since we brought him home from the hospital. I have slept with him through every hospitalization, minus 1 night when Jared insisted I go home to sleep and be with the other 3. I have never missed a therapy session, or a doctor's appointment, or a consult, or a team meeting. I've been there for EVERYTHING! But I can't be there at school. I can't participate in therapy, or translate, or encourage, or comfort, or advocate. I can't cheer for him when he does something new at school, or give him a kiss when he's frustrated by something he's trying to learn. What if he takes his 1st steps at school? What about all the words he says for the 1st time at school? What if he needs something, but his teacher doesn't understand what he's trying to communicate? What if another kid is mean to him, and he can't tell the teacher? I have to let go of all of these things - and so much more - and learn to trust other advocates and providers. Other adults who I know will love him - how could anyone not? - but don't know him like I do. I know that God IS & WILL BE with him, but God isn't going to tap on the teacher's shoulder and say, "Excuse me, but Judah is trying to tell you that he's thirsty." Or whatever. This is SO hard. I'm not alone. Judah's OT & teacher have both reassured me that this is very difficult for each family that walks this road. It's flooded with the tears of moms who love their kids and struggle to let go. 

On the flip side of all that... I am very excited for Judah. Because I know this is best for him, I can celebrate what school will do for him. What he'll learn; the adults he'll grow to love; the kids he'll interact with and learn from, and even teach; what he'll experience there that he can't at home; the ways in which he'll be challenged. I'm excited to see his progress. I can't wait to see him improve his skills and add new ones! He'll get to play on the playground. He loves that! He'll feel like such a BIG kid in those chairs, at the tables, during song time. Oh my goodness, song time! He LOVES music!! He's ready to go! He always handles change better than his mama. 

I've been impressed with everything I've heard about preschool so far. We even went for a classroom visit. That helped. We asked a LOT of questions. We met some of the people that will make up his new services team. They're totally committed to doing everything they can to teach Judah skills that will help him become more independent, as well as provide the care, comfort, & cheering he'll need along the way. I was a little worried about how little he is. His feet don't even touch the floor when he's sitting in the tiny-to-begin-with preschooler chair! But I learned from his current teacher & OT that they will adapt everything for him in the classroom. They'll adapt his chair with some kind of foot rest, so his feet will touch "floor". They'll teach him how to climb up into his chair on his own. He'll learn how to wash his hands at the sink, and they'll adapt that situation for him so he can do it himself. He'll learn to recognize his name, and how to hang up his backpack on his hook by his name. The help will be there for him whenever he needs it; but the goals will be to equip him to do what he needs to on his own if at all possible. Speaking of his backpack, I found the perfect one. This was kind of a big deal to me. I know he doesn't care, but I did. A lot. And when I say perfect, I mean ridiculously so! (Pictures to come. My camera is dead.)

It has been cool to see God's hand in this process of transition. More often than not, it's been through the encouragement and affirmation of his OT; but it's also come through some big deal kinds of things, too. We discovered that all but 1 of the van drivers are grandpas! They call the kids in their vans their buddies. Some of them decorate the insides of their vans with colorful, seasonal stickers. They love what they do! [Does anyone else think that this is my dad's calling when they move to Omaha?] I also met one of the school secretaries when she brought a van out to see how Judah's rear-facing car seat would work. It didn't. Long story short, he is now forward-facing! WOOT WOOT! That wonderful woman took 30 minutes to listen to me and encourage me. She allowed me to cry (I told you it's happened a lot recently) and then totally affirmed me and shared from her own experiences as a mom with a special son, now grown. That was amazing for me, and I know God did that. The biggest thing for me is who God assigned to be Judah's teacher. We know her family through CCS, because her dad served as the president of the school board for quite awhile. She grew up going to CCS. She loves Jesus! She's going to be wonderful for Judah this year, I know it. 

This has been long. Thanks for sticking with me. With Judah. Although, he's super easy to stick with. It's that man-sized charm squeezed into that little boy body. He's irresistible.

One more thing. If you happen to see me out and about tomorrow morning, don't be alarmed by my red, puffy eyes, or the paper bag I'll be desperately clinging to. That will just mean that I was actually able to drop Judah off for his 1st morning of summer preschool. If you have the courage to actually come near me in such a condition, just calmly put your hand on my arm and say, "Look, Honey, you're growing!" 

Maybe someday "change" won't be a 4-letter word to me. Maybe it'll just be a word. 

Judah, Judah, Judah

The house is quiet. That would mean a lot more to you if you had been here 20 minutes ago, before Jared & my brother took our 6 oldest kids (the 2 "babies" are napping) to the park. It's a whirlwind of activity when all 8 are awake and playing; but we're having a good time together, and before I know it they'll be all packed up and backing out the driveway to go home. I thought I'd better use these few minutes I have to myself to get a few thoughts and happy tidings down.

I wish each of you could spend some time with Judah. It's amazing to me how much he's growing and changing; how much he's picking up on and learning as we and his early intervention team work with him. He's a phenomenal little boy! Such a joy to be around. So affectionate. So laid back. So curious and mischievous.  So opinionated...and yet so go-with-the-flow. So loving and compassionate. So determined and driven. I had no idea how God was going to bless and enrich our lives through Judah. Anyway, on to his many new achievements! He's become much more communicative in the last several weeks. He's initiating sign language and responding with it consistently and without being prompted. He's saying "more", "up", and "eye". I LOVE hearing him say words! No one else would recognize them as those words; but I know all the cognition and skill that goes into being able to voice something specific, so every time he says something I can't help but grin from ear to ear and cheer him on! He just underwent testing through his early intervention program because he's turning 3 and will transition into a new program. His gross motor skills are the most delayed, landing anywhere from 10 mo. to 14 mo. But he's always improving, and his fine motor and cognitive skills are not quite as delayed. And really, who cares? OK, every once in a great while it's hard to see what his peers are doing...but really, it's OK. He's amazing all by himself, and he's achieved much more than some people ever thought he would. He's standing! He can stand himself up without holding on to anything else, and balance for 3-4 seconds. That's HUGE! He's cruising along the whole length of the couch! He's climbing up and down from the ottoman! He's taking steps with us! He's met all but ONE of his goals we & his team set for him just 6 months ago! It seems like he's almost always doing something new!

We're really excited about Judah participating in "summer school" for 4 weeks in June & July. It's a special ed. class for 3 yr. olds that meets twice a week for 1 1/2 hrs. It's basically a prep. for pre-school...which we haven't decided about one way or another yet. I was adamant that he NOT go to pre-school, but...I might change my mind. That's really for another post. Judah is just so social, and we're excited about the opportunity he would have to be with other kids like him and receive his services with them at school. He would even get to ride the "special" bus. Speaking of which... I had this idea in my mind that Judah riding that bus was going to be so cute. The other day I pulled up to an intersection and stopped right next to the LaVista/Ralston Special Services bus. There it was. Handicapped sign on the bumper. Special seats inside. "Special Services" on the side. I called my mom and broke down. It really hit me that my kid was going to be on that bus. The bus that mean, "normal" kids make fun of. The bus for handicapped kids. The bus that no parent ever says, "Hey, sign us up! We'll take a seat in the front." It hit me again that Judah will probably never have a normal school experience. He'll never have the privilege of enjoying a Christian education like my other kids do. He'll be one of the kids that gets pointed out or labeled by the "normal" kids. These are things I almost never think about. I love Judah so much - I'm so proud of him and so thankful he's mine - that I don't get caught up in what will be or what is coming. But sometimes... Sometimes I'm reminded and faced anew with the reality that Judah is different and will always need to be treated that way. It's hard, because this was another reminder that grief, in varying degrees, will always be a part of my life. It's like singing for the 1000th time a worship song that praises God as Healer, and sobbing suddenly because that 1000th time it reaches something deep inside that's still hurting.

Enough about that.

We saw Judah's endocrinologist this week. Judah grew another 1/2 inch in 3 months and graduated from the length measurement to the height measurement! He can now stand (read: I hold his feet and legs against the measuring stick & the doctor holds his head) to be measured! He didn't gain any weight, though. I think mostly because he's moving around so much more; and it's hard to add avocado and sour cream to the table food he's eating. How do you put avocado on cut up pizza? I made him his own batch of snickerdoodles - 90 calories per cookie - and he gets to snack on those during the day. Lucky boy:) His peanut allergy makes finding appropriate store bought, processed foods a challenge. Homemade is better anyway. He's drinking about 8 oz. a day, doing amazingly well on the nectar thickness liquids. Every oz. he drinks on his own is an oz. closer to saying good-bye to that button. My guess is that it will be another 2-3 yrs. before we can take it out and leave it out, but at least there's light at the end of the tunnel!

Pray for Jared and I as we make the decision about pre-school for Judah. My concern is his health. I'll be talking to his pediatrician about the possibility of sending Judah just 2 mornings a week, rather than 4, so he can be with his peers and receive services there. I'm really anxious about the whole transition that happens at age 3 into the new special services program. I'm nervous that I'll be an inadequate advocate for him, or that I'll forget something, miss something, drop the ball on something. He has so much potential, so much promise, and I want to see him succeed and live his life to his absolute fullest capacity! It's a scary, daunting thing to know that a lot of that rests on my shoulders as his #1 advocate. When I hear myself say that I realize that I need to be going to the Lord with all of this. HE is Judah's #1 advocate, and mine, and HE is 100% adequate - MORE THAN SUFFICIENT - all of the time!

That's all I have time for now.

Neither

When will I learn that there is never a simple, black-and-white answer or outcome when it comes to my darling little stinker? He is no longer that naive, innocent little person who has no idea what's coming or what to expect during a test. He is not so trusting anymore. Now...he knows. The test was completely inconclusive, because Judah was completely uncooperative. The test didn't even officially happen. I guess that's better than a fail, but frustrating all the same. He'll have to start seeing the Speech Therapist at Childrens again (good thing we like her so much!) for a little while so we can start "trialing" him. We'll gradually start thinning his liquids and watch for signs of aspiration. I have no idea how long a process like this takes, but I'm still optimistic. I thinned his water at lunch today and he drank it like he's been drinking that consistency forever. Not a single sputter. That's definitely a good sign!

In spite of the fact that he didn't do a single thing that he was supposed to today, he still got to pick a prize out of the treasure chest...of course:) I love watching him do this, because to me it's such a normal, big boy thing to do. Just like any other 2 1/2 yr. old! After much deliberation, he came home with a bath book.

Thanks for praying!

Today is a big, and potentially life-changing, day for Judah. He has another diglutition (swallow study) this morning. I'm nervous about it, because the results of this test today come with long term ramifications. If he fails - meaning he still aspirates any kind of thin liquids - then he has to stay on a thickened liquid diet. That means he continues to drink veeery little fluids on his own, and the G button becomes much more permanent than it is now. Granted, Judah does have a tendency to surprise me; however, this is a road he's been on for a long time, so unless there is drastic change today I don't see any drastic progress in his near future.

If he passes - meaning he doesn't aspirate anything - then he gets to start over in this whole liquids department. That would be a VERY GOOD thing! He would be able to drink any kind of liquid without the thickening agent in it...which means he could drink in a completely new-to-him way...which means he would steadily learn to drink more and more and more in a day...which means he would be taking steps to becoming independent of that button! I don't even want to think about how wonderful and freeing that would be for him, because if it doesn't happen it will be that much more disappointing. I'm cautiously optimistic this morning. Judah has gotten so much stronger all around. He's eating all kinds of foods - different thicknesses, textures, finger foods - so I'm guessing that the muscles and coordination involved in swallowing have also gotten way stronger and have significantly matured. YAY! I would appreciate you all praying for the details involved in this...and my heart that might be dealing with significant disappointment today.

Judah is almost completely recovered from eye surgery. He has 3 stitches yet to dissolve, but his ointment is gone and the scars are already fading. And let me just say, I thought he was into everything before; but now he's really into everything! He's getting more frustrated with me, because I'm saying no more, because he's seeing things and manipulating with 2 hands things that he couldn't or didn't before. It's a learning experience for both of us, but it's GREAT for him!

Judah graduated to the table yesterday! He's been in a booster/highchair since he was a baby; but I decided that it was time to get rid of the tray and move to a booster seat at the table. He looks so cute sitting at the table, and now he can be with the rest of us. He knows he's big stuff, too:) 

My little Mr. BIG

Judah has made it a habit recently of blowing past my expectations and saying in myriad ways, "Mom, you underestimate me!" I still want to treat him like a baby. He is my baby, being the youngest; but I too often treat him like a baby-baby. He's showing me that he understands just about every word that comes out of my mouth. So what if he can't speak? He knows. He's attempting things physically that I didn't think he could. He's imitating his siblings and trying new things all the time. He's way smarter than he gets credit for...and sadly, I'm to blame for much of that. I get stuck in a certain mindset and I miss things. I'm embarrassed to admit that in just the last few weeks I've started talking to him like he's a regular 2 1/2 yr. old kid, assuming that he absolutely can understand everything I say; and I have not been disappointed by his responses and attempts to communicate in creative ways. He's a rock star.

All that to say, we decided it was time to give Judah a BIG boy bed! Jared built him one to match Ezra's, but Judah's sits on the floor. Eventually, when he's able to get in and out, we'll mount his to the wall, too; but for now this is perfect. He's spent 2 nights and 2 nap times in his new bed, and it's the cutest thing I've ever seen! He's so tiny in there! He stays put and snuggles in to go to sleep. And he grins from ear to ear every time we make a big deal about his new big boy bed. I love that he's in a big bed, because now Jared and I can lie down with him like we do with our other kids sometimes. I just can't believe how quickly he's suddenly growing up!

His recovery is going really well. Every day there's less bruising, and the swelling is gone! He's looking more and more like his new self. I was looking at some pictures from last summer, and there is such a stark contrast between then and now. He looks older, more alert and aware, more like his peers, awake (no more comments about my wide awake boy looking like he's so tired or needs a nap or just woke up - ugh)! All of a sudden he has these big, beautiful eyes! And he makes this face. He makes a little "o" with his mouth and says, "Ooooo". With his sparkling, round eyes he looks like the cutest little hoot owl. We see the specialist today, and I expect nothing but good things. We also get to go down to just 5 times a day for 2 days with the ointment. Then 4 times, then 3...we're almost there! Judah is doing really well with that now, too. He's resigned himself to the fact that it has to happen.

While I'm thinking about it, I should list some of his new accomplishments:

- He signs "Daddy", "Play", and "Shoe"
- He says "All Done!"
- He's putting puzzle pieces together
- He squats on his feet for a couple seconds at a time, trying to stand
- He climbs stairs
- He loves cleaning his tray with a wash cloth
- He is on his feet all the time! *However, his ankles are buckling again. He's being fitted for new braces    
  this week.
- He loves his new OT, is getting used to the rest of his new team, and has made the transition to a new
  team really well! (Better than his Mama...naturally.)

Jared, Judah, and I all had a much better night. Deep, wonderful sleep in between every 2 hr. ointment dose. I almost felt like a new person this morning:) Today has been better all around, and Judah's swelling has gone down even more! I just can't get over those big, bright eyes! I'm praying that the dr. won't have to make any adjustments to how far he pulled his lids up, but that remains to be seen. Judah has follow-up with the specialist on Tues. This afternoon we got to go down to ointment every 3 hrs. That 1 hr. makes quite a difference! I can't wait til this healing process is totally over & we get to see exactly how Judah will look. He looks so different already; imagine what he'll look like when all the swelling and bruising is gone!

That bath felt good!

I left him with his sister 5 min. too long.

He didn't seem to mind.

Judah has new words! 

Healing Prayer

After a really rough night, Judah woke up with a smile on his face! He's definitely feeling much better today...and thanks to the gift of Tylenol, we were even able to get a few smiles out of him last night. He's tired today, he wants a few more cuddles than usual; but he's playing, and smiling, and was happy to be at the YFC office for a little while this morning. He totally took advantage of the opportunity to get more cuddles from more people there. The swelling seems to have gone down a little around his eyebrows, so maybe the doc's prediction of peaking on Fri. morning will be wrong. I hope so.

Getting out of bed this morning after so little sleep was not easy; so finding 17 encouraging, uplifting, prayer-backed messages in my inbox was incredibly life-giving! What a beautiful way to start my day. Thank you so much to each one of you who have spent time in prayer on our behalf. And thanks to those of you who have texted your love to me as well:) The guys at the office had a time of prayer surrounding us, too. I've been struck again by how powerful prayer really is. Or maybe by how powerful the act of prayer can be in or for a person's life. Just knowing that so many care so deeply for Judah...that by itself is healing in a way. I absolutely believe that God can and still does physically heal people in all kinds of ways, in all walks of life. However, when He chooses to use illness as a means to glorify Himself, I believe that He also provides other kinds of healing along the way. Spiritual, mental, emotional. Even relational. He does so, so much - reveals His power and His glory in so many amazing ways - in a person's life, and the lives around them, without ever having to make the physical stuff any better. I needed that reminder today. Thanks, God.

Bright Eyes

Eyelid Surgery Sucks Right Now

I didn't really know how else to title this one. It is what it is right now. The surgery went well today, and Judah handled the procedure and anesthesia like a pro. He's been sleeping on and off all afternoon - we were home by 1 - but he's uncomfortable when he's awake. Who wouldn't be with all that swelling?! Putting the ointment in his eyes is awful. One of those things parents have to do to their kids because they love them, but wish they could swear through the whole thing because it's awful for him. I hate that. Please be praying for this specifically. He has to have ointment every 2 hrs. for 48; then every 3 hrs. for 48 and on down the line until we get to 5x a day, 4x a day, until we're down to ZERO. It's going to be a long week, I fear. I'm sure he'll do better and better as the days go by, knowing how "champy" he is, but in this moment it's just hard to see him like this and know what I have to do to him all week.

Lydia was her classic, nurturing, sweet little self when she saw him for the first time. She looked at him, looked at me, gave her head a little shake and said, "Well, he doesn't look good." She quickly followed that up with assurances like, "Judah, you look cute with puffy eyes" and "It's OK, Judah, you're still cute"! Ezra had tears when he saw him, and I spent some time holding him, telling him how proud I am of him and his tender heart. Reassuring him about Judah. Telling him what a wonderful big brother God made him to be for Judah. Eli is taking everything in stride.

I'm eager for the next couple of days to be over. Swelling will peak around Friday morning, and then he should start feeling a little more like himself. Thanks for praying!!!

A blast from the past...

I'm embarrassed to admit that I'm the blast from the past. I can't believe it's been 2 months since I last spent time here! Busy, busy, busy. So much has happened in our lives; so much change. Some time I'll have to get here to put it down. I'm also thinking of starting another blog. More of a family one with an emphasis on YFC stuff. We'll see. Anyway, Judah's eyelid surgery is set for tomorrow morning at 8. He's looking, sounding, and feeling really good today so all systems are officially go. Thanks to each of you who will be praying for us tomorrow and throughout the following week of recovery.

Praying for unrestricted vision for this precious Little Lion!